The tragedy of American organ donations: So many more people could be saved

How our flawed organ donor system is costing lives — but could easily be fixed

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March 23, 2014 6:00PM (UTC)

Eighteen Americans will die today while waiting for a kidney. For many of them, that didn't need to be the case.

This sad fact gets far less attention than it deserves. Perhaps more remarkable than the sheer number of deaths is the fact that it is a political failure — not a medical one. We can chalk it up as one of the many consequences of a gridlocked legislature. The issue is not sensational enough to generate discussion on the Sunday morning talk shows and instead falls into the much larger bucket of topics that legislators simply don’t care enough about, or that a broken government doesn’t have the time to address. However, it may soon grow into an unavoidable problem.

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Consider a few alarming statistics: The waiting lists for organ recipient candidates broke 100,000 names in 2008. As of March 21, 2014, it now exceeds 121,000. Approximately 80 percent of those on the lists are waiting for kidneys (a redundant organ of which humans have two, but only need one to live normal and healthy lives, provided that donors receive proper post-surgical care). Another 15 percent or so of those on the waiting list are waiting for livers. While humans only have one liver, the organ has two major blood supplies and, unlike the cells that constitute many other organs, liver cells re-grow. It is therefore possible for living donors to gift one third of a healthy and functioning liver to a recipient and, in otherwise-healthy patients, have both the donor and recipient eventually re-grow an entire, fully-functioning liver.

Currently, the average wait for a kidney is around seven years. While patients in the end stages of renal disease (ESRD) wait for a kidney, they must undergo dialysis three times a week in uncomfortable four-hour sessions, for years, while their overall health deteriorates. The later they receive a transplant, the less likely they are to survive. In addition, there are approximately 300,000 other Americans presently on dialysis who are not even counted on the waiting lists for kidneys as they are either too old or too sick to qualify as recipients, or have simply not yet been added. Each day their ranks grow.

Is there simply nothing we can do? No. The tragic aspect of this particular shortage is that there are plenty of organs and there are things we can do. Yet, this year we will lose more than 7,000 Americans, many of whom will be buried unnecessarily.

The chain of events that causes the organ shortage begins with overeating and poor nutrition, which have attracted a great deal of attention in recent years — while awareness of the resulting shortage of kidneys has not yet made the agenda of the mainstream media. As the epidemic of obesity continues to grow in the U.S., the incidence of diabetes also increases, resulting in an expanding number of patients with end-stage renal disease — many of whom land on waiting lists for kidneys.

In 2010, more than 355,000 ESRD beneficiaries on dialysis were covered under fee-for-service (FFS) Medicare and received dialysis from about 5,500 ESRD facilities. In that year, Medicare expenditures for outpatient dialysis services, including separately billable drugs administered during dialysis, were $9.5 billion.

Every year there are more patients waiting for a longer time, meaning that the cost of maintaining those dialysis patients grows with each passing year, and each passing session of Congress. It is quickly becoming a financial epidemic — in addition to a medical one — and all of it could be effectively addressed by creating better access to more kidneys. If ever there was an issue Republicans and Democrats should agree upon, it’s an opportunity to save the lives of thousands of Americans, help thousands more and save money while doing it.

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In addition to long-term educational programs to improve nutrition and reduce obesity for Americans, a viable near-term solution to the organ shortage must be three-pronged:

The first part of the solution depends on the education of hospital staffers and the families of recently deceased or brain-dead loved ones — as well as enforcement of laws that make registration as an organ donor legally binding. (Many states have such laws, but enforcement remains uneven.) More effective awareness and educational campaigns are needed to dispel common myths, such as the misconception that “brain-dead” patients can recover, when they actually can't, or that doctors will try less to save someone who is a registered organ donor.

Even when a potential organ donor has registered on his driver’s license, signed up for the official registry and gone so far as to explain his wishes to his family prior to death, there is no guarantee that his wishes will be honored at the critical time. Even in states where registration is “legally binding,” a donor’s wishes are often quickly set aside by hospital personnel when confronted with objections by distraught family members at the worst of times. (Just imagine if family members could simply ignore their loved one’s wishes regarding his or her finances after death. Shouldn’t the fate of a person’s body be the individual’s choice just as much as the dispersal of his money?)

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The problem is, while there is effectively no reason that a hospital must accept an organ donation from a decedent over the objections of her family -- because of the aforementioned lax enforcement -- there are many reasons that doing so could pose risks, including but not limited to lawsuits, bad press and an overall reduction in additional donors thereafter.

The Uniform Anatomical Gift Act (UAGA) grants any competent adult the legal right to designate whether he or she wishes to donate his or her organs for transplantation after death... [T]he individual, not the family, should determine the postmortem disposition of the individual's body. The patient's wishes while living should extend after death, regardless of relatives' objections.

The article goes on to explain that “Family refusals to donate (even when the patient's wish to be an organ donor was clearly elaborated before death) constitute a major source of lost donations. Each year in the United States, relatives refuse donation of and bury at least 5,000 organs that are medically suitable for transplantation.”

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Simply put, a commitment is a commitment. There should not be a choice.

Step 2: Implement a modern opt-out system of presumed consent.

In the U.S., we utilize an “opt in” system for organ donation. Unless you actively agree to be a donor, your organs will not be available for donation if you end up brain-dead on life support or die. And even if you are signed up to a registry, distraught and ill-informed family members often overrule those wishes anyway. Presumed consent simply reverses this, putting the onus on citizens to “opt out.”

Spain, Italy, Austria, Belgium, and some other European countries have enacted laws that create presumed consent, or what I prefer to call 'default to donation.' In such a system, the presumption is that you want to be an organ donor upon your death— the default to donation. People who don’t want to be organ donors have to say so by registering this wish on a computer, carrying a card, or telling their loved ones. With default to donation, no one’s rights are taken away — voluntary altruism remains the moral foundation for making organs available, and, therefore, procuring organs is consistent with medical ethics.

Anyone with a religious, ethical, philosophical — or even a random and unexplained — objection to being a donor need do nothing more than fill out a brief form in order to opt out. “Based on the European experience," Caplan explains, "there is a good chance America could get a significant jump in the supply of organs by shifting to a default-to-donation policy. Donation rates in European countries with presumed consent are about 25% higher than in other European nations.”

Presumed consent could raise the participation rate from the current 45 percent to as much as 97 percent -- almost exactly equivalent to the 95 percent of respondents in a 2005 Gallup poll who said they approved of organ donation. The policy would drastically reduce the complexity and expense of ongoing efforts for registration, creating awareness, and operational support of current registries.

An opt-out system would also improve the rate of family consent -- discussed earlier -- which is a critical factor in addressing the organ shortage. According to a 2005 study from scientists at Harvard and the University of Chicago, “Countries with an environment of presumed consent foster greater participation, and less objections, from the family members of potential donors.”

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“Awareness” campaigns are simply not enough, and signing up more donors to state registries, or to a national registry, will have only modest and incremental effects. Most states now have driver’s license registries, and about 45 percent of adult Americans have signed up — yet the waiting lists grow daily. Andrew Cameron, MD, PhD, of the Johns Hopkins University School of Medicine in Baltimore, recently inspired Facebook to launch a new feature that "let users change their profile status to indicate ‘organ donor.’” (Cameron had been roommates with Sheryl Sandberg, COO of Facebook, at Harvard.) The program led to a huge short-term spike in online registrations, but the results did not last, and it did not put a dent in the waiting lists. Cameron and Sandberg are to be applauded, but they need help from Congress.

As Cameron told Slate last year, “The shortage of donated organs... is not a medical problem but a social problem.” However, for new government initiatives or programs like Facebook’s to be successful and drive the overall participation rate in organ donation registries significantly higher would require massive and sustained educational and logistical operations. Ongoing effectiveness would require long-term commitments, resources and a great deal of money -- and it would still make little difference. Even a 25 percent or 50 percent improvement in participation would still pale compared to what we’d get with presumed consent. In countries where the onus is on citizens to opt out, only about 3 percent ever bother to do so — meaning 97 percent are donors.

Step 3: Get rid of the "God Committees"!

In 1983, Cyclosporine (the first immunosuppressant anti-rejection drug) hit the market and organ transplantation quickly moved from the realm of science fiction to that of everyday medicine. The number of successful transplants grew exponentially, but the number of eligible recipients started to grow even faster. So our government took action: In 1984, Congress passed the National Organ Transplant Act (NOTA), which created the Organ Procurement and Transplantation Network (OPTN) and called for it to be run by a private, nonprofit organization under federal contract. The federal “Final Rule” provides a regulatory framework for the structure and operation of the OPTN and mandates that it should:

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Increase and ensure the effectiveness, efficiency and equity of organ sharing in the national system of organ allocation,

Increase the supply of donated organs available for transplantation

The United Network for Organ Sharing (UNOS) was first awarded the national OPTN contract by the U.S. Department of Health and Human Services in 1986. A quasi-governmental agency, UNOS continues today as the only organization ever to operate the OPTN. How is UNOS doing in their efforts to achieve those two primary goals? Well, the aggregated waiting list has skyrocketed from a few thousand names in the eighties to over a hundred and twenty thousand, and the average wait has grown from around one year to seven. Throughout the entire existence of UNOS, the desperate shortage of organs for American patients who need them has only worsened. There has been little in the way of an effective national awareness campaign and little has ever been done to substantially improve access to life-saving organs.

Furthermore, waiting lists at transplant centers around the country are not subjected to proper oversight to ensure more fair and less arbitrary distribution of precious life-saving organs. The committees that maintain the waiting lists at transplant centers around the country are known, colloquially, to some in the illegal organ trade as “God Committees.” They have significant leeway in deciding who to move up or down their list, and their existence contributes to the fact that white people statistically get more organs per capita than black people, and rich people get more than the poor. Rich, white people also get more of the “better” organs (those sourced from living donors as opposed to those harvested from cadavers).

According to a 2013 article in Nashville's Tennessean, “Although the number of blacks and whites waiting for a kidney in 2011 was about the same, whites received just over half of kidney transplants that year, while blacks received less than a third.” A study in the Clinical Journal of the American Society of Nephrology, first published online in September of 2010, stated: “Living donor kidney transplant (LDKT) is usually the best treatment option for kidney failure but occurs less frequently among persons who are black or older. In 2007, blacks comprised only 13.8% of LDKT recipients in the United States — a percentage that has remained unchanged for 10 years. In contrast, blacks make up 30 percent to 40 percent of the dialysis population.” The researchers go on to say that, "We were struck by the disparities by race and insurance type: African-Americans were much less likely to receive kidney transplantation prior to requiring dialytic support, as were those with public or no insurance."

The distribution of life-saving kidneys and other organs should not be left up to the individual “God committees” at the many transplant centers scattered around the country, each with its own set of rules and ability to deviate from those guidelines, arbitrarily, as its members see fit at any given moment. Whether the decision of who to move up, or down, on a waiting list is ever motivated by ill intent, somehow rooted in subconscious preferences or prejudices, or whether it is something else entirely, remains unknown.

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There is, however, an ongoing inequity based on race and economic status. It needs to be investigated and addressed by the Department of Health and Human Services or a congressional committee. National standards need to be created for who gets placed on waiting lists, who gets moved up or down, and why, and they need to be enforced with active oversight.

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The ethical and philosophical questions that come up in any evaluation of organ transplantation and organ donations are a minefield of religious and ethical confusion and contradictions. Most major religions are strongly in favor of organ donations, and Pope John Paul II stated, "The Catholic Church would promote the fact that there is a need for organ donors and that Christians should accept this as a 'challenge to their generosity and fraternal love' so long as ethical principles are followed."

Under a system of presumed consent, those who object could simply opt out and would be unaffected by it. The people on those waiting lists need life-saving organs and right now there are rational, ethical, cost-saving and proven methods available to us of getting those needed organs to them. Even if presumed consent legislation doesn’t wipe out a major portion of the organ shortage in America overnight — though it might — and it only saves a handful of lives, don’t those lives matter enough to warrant some attention from one Republican and one Democratic member of Congress? For the 18 families who will lose a loved one today, it is worth a conversation.

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In the coming years and decades most members of our current Congress will know at least one person who will suffer renal failure and will need a kidney to stay alive. Some of them will die waiting. And our leaders in government can — must — do something to prevent that from happening.

Stu Strumwasser is a Brooklyn-based writer and entrepreneur. He recently completed work on his first novel, "New York Jack," about a black market organ broker. He can be reached at stustrum@yahoo.com.